"The trouble is that once you see it, you can't unsee it. And once you've seen it, keeping quiet, saying nothing, becomes as political an act as speaking out. There is no innocence. Either way, you're accountable."
— Arundhati Roy

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12 August 2012

Disability in an Ableist World

Disability as a constructed concept is not a commonly understood or propagated idea in the mainstream of an ableist society. The average non-disabled person, and frequently even disabled people who’ve had limited or no exposure to disability rights theory or disability culture, does not understand disability beyond something that happens to other people, thereby rendering them tragic objects of pity, scorn, and charity. The general understanding of disability among those whose professions and research lie in the long-established fields of health sciences, rehabilitation sciences, special education, and abnormal psychology is one of a highly and often exclusively medicalized model that understands disability as a pathology in need of treatment, remediation, rehabilitation, and mitigation.

For theorists in the emerging interdisciplinary field of disability studies who are increasingly disabled themselves, there are two foundational understandings of disability—essentialism posits that disability is inherent to the person, whether innate or acquired, while constructivism posits that disability is a social construct and exists only because of sociological, cultural, or political factors. Those who understand disability as a medicalized phenomenon through the lens of an exclusively biological or psychological model of disability are essentialists. Those who insist that there is no such thing as disability or that everyone is disabled in some way are frequently constructivists.

But it cannot be denied that disabled people of any particular disability or condition do have inherent differences from nondisabled people or people with different disabilities. The Autistic brain is different from the non-Autistic brain; those who are Deaf or Blind perceive the world in different ways than those who are hearing or seeing; those who use wheelchairs move differently than those who have no need to use wheelchairs. These differences are real, and the differences are certainly not social constructs. Thus, constructivism does not adequately address the lived and inherent neurological, mental, emotional, and or physical differences that disabled people of any particular group have from those outside that group.

Yet essentialism discounts the roles that lived experiences, attitudinal biases and prejudices, policy and systemic barriers to access, societal ableism, constructs and representation of disability, and hate crimes play in the lives and shared experiences of disabled people across all sectors of society. Essentialism does not address the systemic denial of equal access and opportunity for disabled people in education, housing, community and social life, healthcare, employment, and policymaking. And it certainly fails to consider the consequences of rhetorical and discursive constructions of disability and the disabled experience.

Disability is far more complex and nuanced than either pure essentialism or pure constructivism are capable of adequately conveying. The experience of disability, of being disabled, arises when a person whose neurological, mental, emotional, and or physical differences are atypical and divergent enough from the neurologies and physicalities of the majority so that this person is forced to exist and live in a society and world not constructed to incorporate natural supports and full inclusion and access for people like this person. That is, the experience of disability and being disabled is the result of the interaction of a person’s inherent differences with a society and its attitudes and policies.

On the Massachusetts island of Martha’s Vineyard, it used to be that a significant percentage of the island’s population were deaf until the mid-twentieth century.[i] As a result, nearly all residents learned Sign language from an early age, whether they were Deaf or hearing, and easily switched between signing and speaking without much effort or thought regardless of who was present in the conversation. Today, there are no longer any Deaf people born into the signing tradition living on Martha’s Vineyard, yet elderly hearing islanders continued to communicate in Sign language as late as the 1980’s.[ii]

In communities where everyone or nearly everyone shares the same sensory, physical, cognitive, or emotional experiences, such differences that might in mainstream society be considered to be deficits or disability are not, in fact, disabling at all. While divergent and diverse neurologies and physicalities exist in nature and in isolation of cultural, sociological, historical, and political context, disability does not exist in the absence of a society’s rhetorical and discursive constructions of it that create attitudinal, systemic, and institutionalized barriers to access for those whose neurological and physical variances are atypical.

In order to fully understand disability and the disabled experience, and in order to effectively and meaningfully advocate for attitudinal and systems changes that will lead to equal access and opportunity in a more just and equitable world for disabled people, it is imperative to both examine and challenge the common rhetorical and discursive constructions that posit disabled people as the Other and disability as a pathology, while at the same time suggesting a radically different construction and understanding of disability and the disabled experience as natural and normal parts of the human experience.

Disability has historically been understood in the paradigm of a strange and alien other, as evidenced by the sterilization and eugenics movements targeting the disabled for fear that we might bear disabled children and perpetuate disability. Even today, disabled people who wish to kill themselves are more frequently praised as brave and courageous, and offered the option of euthanasia, while non-disabled people who express the same suicidal ideations are referred to anti-suicide counseling and support.

The lives and humanity of disabled people are routinely questioned not merely by the supposedly objective and well-meaning professionals hailed by the public as experts on disability, but also by the mainstream media. Disabled people face prejudices and attitudinal barriers such as the presumption of incompetence, infantilization, dehumanization, the belief that disabled people are incapable of being sexual beings, paternalism, and the prevailing assumptions that our lives are tragic and that it should be normal for a disabled person to seek to be cured of disability. We are frequently assumed incapable of having opinions or directing our own lives, treated as children even when we are adults, denied access to basic healthcare or education, deprived of accessible or meaningful sex education or even the opportunity to form romantic relationships, treated as though our opinions and ideas have no value, and discussed as though we are not present and cannot be.

Our experiences and lives are usually described through a paradigm of grief, pity, shame, scorn, tragedy, and fear. Our non-disabled parents are taught to mourn their disabled children’s existences and to wish for their children to be cured. Our neighbors are taught to pity us, and our families are taught to be ashamed of us. Youth who believe that their intentions are good are taught that our lives are inherently tragic and that they should be afraid that more children will be born disabled if they do not contribute money to charities working frantically to eradicate disability. If media portrayals and representations of disabled people are to be believed, we are incapable of living full, rich, and meaningful lives, and we remain perpetual children regardless of biological age. Society teaches the non-disabled to fear and pity us, and it teaches us to be ashamed of and hate ourselves.

The concept of disability pride, which has existed for decades in an organized fashion, is revolutionary in its biting response to the paternalism and discursive constructions of disability popular in our society. The idea that people with deformities, people with visible physical disabilities, and people with neurological or mental disabilities are capable not merely of accepting themselves but of publicly proclaiming their pride in being disabled is anathema to a society in which deviation and divergence from neurological and physical typicality is labeled pathology and defect. Yet it is a necessary idea, because we who are disabled must continue to reassert our necessary presence in shattering old rhetorical and discursive constructions of disability while creating and perpetuating new ones.

Without significant changes in societal and individual attitudinal barriers to access, there will be no meaningful systems change, no changes to policies and institutions that create further barriers to equal access and opportunity and full and equal participation in all facets and aspects of life. Few outside the disability community ever consider the consequences of their perceptions and limited understanding of disability, and many whose views are shaped by unsound and dangerous ideas continue to perpetuate ableism without ever having their privilege challenged and examined. Disability exists because we are largely complacent in allowing ourselves and our society to perpetuate a world where disabled people are marginalized and oppressed by attitudinal and systemic barriers to access.

We need the concept of universal design to move from small academic circles and pilot programs in public schools to a foundational principle of all aspects of life, culture, and society. We need to incorporate the language of the Developmental Disabilities Act, which describes disability as a natural part of the human experience, into our fundamental attitudes and everyday practices. We need to stop using language that marginalizes and oppresses and begin to craft rhetorical and discursive constructions of disability that recognize our innate ability to lead full, rich, and meaningful lives as disabled people across the lifespan. We need to stop medicalizing and pathologizing every characteristic belonging to disabled people, and begin to address the problems and deficits in our society and its institutions and policies rather than looking to problem-find in the disabled person. We need to stop presuming incompetence and dehumanizing disabled people, and begin to presume competence and recognizing the innate humanity and equal quality of life of all human beings.

We need to build a world in which all supports are natural supports provided unquestioningly, without the feeling of legal or contractual obligation, but because of a sense of human dignity and decency, and where those supports are not viewed as accommodations for a standard system but natural and normal facets of a universally designed system. We need to educate young students, young researchers, young clinicians, young educators, and young service providers about the diverse and rich history of disability cultures and communities in the context of a disability rights activist movement and a disability studies interdisciplinary scholarship, and we need to encourage and support young disabled people to empower themselves and their peers to demand equal access and opportunity and full and equal participation and inclusion. We need to educate our children and youth about disability as diversity, and we need to incorporate our history into mainstream history.

Ultimately, we need to challenge the constructions and institutions that continue to perpetuate ableism across all facets of society, and we need to promote this radical notion that disability is natural and normal—not something to be feared or pitied, but something to be welcomed and proudly proclaimed.

how to respond to the question "what is wrong with your face" (partial paralysis)? it's not like my whole face is affected, and the word 'wrong' is like a judgment. any feedback on what to say semantically that could help in this situation? Thanks!!

Speaking as a disabled salesperson, I know I would never approach someone (without a certain, established level of trust) and ask them "what's wrong with" any part of them.

On the other hand, I would probably approach them as though it were a casual observation - "I noticed something unusual about your face. Are you a stroke survivor?" or something like that.

But I'm pretty thick-skinned when it comes to that stuff. If someone asks me what's wrong with my legs, I correct them and say "I'm actually brain-damaged. Could've fooled you, though, huh?" and I proceed to explain what happened.

Sorry, Lydia, but I wasn't able to read this post after the first line. Not because I made any snap judgements, but because with my dyslexia, I find the bold text throughout to be extremely off-putting. Please fix or make it so I can adjust it.

Hi! Thank you for sharing your thoughts with me. I manually approve comments, so sometimes it takes a few weeks, months, or even years to find and approve comments. This delay is normal. (Note that I also don't publish every comment, since this is my personal blog.) Unfortunately, anonymous commenting isn't available anymore since it resulted in over one million spam comments in a short period.

Autistic Hoya strives to be

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Photo by Kory Otto-Jacobs, taken March 1st, 2013 in Farragut Square Park, Washington, DC, United States, for the National Day of Mourning vigil for disabled people murdered by family members or caregivers. This is an annual observance that was originally organized by autistic activist Zoe Gross in 2012 following the murder of 22-year-old autistic man George Hodgins by his mother.

This is a cropped, horizontal banner style black and white photograph depicting one of the vigils and its participants (who are of various races, genders, and dis/ability statuses), including Kerima Çevik, Nuri Çevik, Patrick Cokley, Yoshiko Dart, Chad Carson, Linda Finder, Barbara Platt, Taylor C. Hall, and Samantha Bodwell, who is holding a large poster with a photo and the name of Benjamin Barnhard. Lydia Brown (that's me) is in the middle with their back to the viewer. Many participants are holding cameras, video, recorders, or phones. There is an American Sign Language interpreter. This picture shows about 16 people.

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If you need to serve process to me for whatever reason (I hope you're not suing me?), you can email the documents to me as a scanned attachment if your jurisdiction allows electronic service of process, or to request an address or fax number if your jurisdiction does not. I'm in law school; it'll be a practical learning experience (if not exactly the one I want to have).